Mid December Update

It's been two weeks since Min Ser has been commuting to work. And so far so good. Mentally and physically, he is able to keep up with the work load. He has even started playing ping pong again (there's a ping pong table at work). He can now 'tahan' through 3 games and sometimes manages to win one (or two). He is eating well and sleeping well.

Some have asked me when will you know he is clear and well. Well technically, he is already cancer free, and well. The key is now the milestones. The longer he stays clear, the higher chance the cancer will not return. So we will celebrate each milestone. 6 months, 1 year, 2 years, 5 years, and 10 years. By ten years, his odds of relapse will be as like any healthy person.

On my end, I've been working as a Real Estate Negotiator/ Property Agent since November. I've set up my own website at www.realpropfolio.com, and I also market on our popular Malaysian property sites. It's almost two months in now. There's been numerous viewings, many new places, and I've met so many new people! It's definitely a very interesting venture, albeit one that requires much patience.

Many have asked me why real estate, I mean... graphic designer to real estate negotiator? I'll say why not? The decision was to start from scratch picking up clients and projects as a freelance graphic designer, or to venture into something new. Though that being said, a graphic designer's skill set is never wasted, it really can be used in essentially any industry. For me, it has been an important arsenal for marketing and advertising properties. 

In addition, I'm ok meeting new people, I already like viewing houses, I don't mind travelling, I am relatively patient, I don't give up easily, plus the flexible hours still allows me to take care of my 2 plus year old daughter. I just have to work out an arrangement for someone to take care of her when I have appointments. Almost two months in, no regrets. I'll take each day as it comes, and see how it goes from here. Wish me all the best people! : )

Hickman Line Removed

Min Ser's Hickman Line has been removed. Doctors say there was no reason to keep it in since his condition is good, and he has not needed transfusions since he was discharged from hospital post transplant. Though this will mean he will need to be needle pricked to draw blood for subsequent check ups (which nobody likes). Next check up will be on 30th Dec.

All in all, he is doing well, and looks fit to start commuting to work tomorrow.

3rd PET Scan

Thank God Min Ser is free of the shingles. He has finished his dose of anti viral medication and thankfully it was under control at an early stage.

As of today, Min Ser has undergone a 3rd PET scan at SDMC. This PET Scan will assure us that the 2nd PET Scan results remain consistent. Ie: no more cancer cells or deposits. The results should be out by next week.

Just to note though, Min Ser had some reaction post PET Scan. He was shivering badly and had high blood pressure and slight fever. After taking some panadol and resting at the ward the effects subsided. According to the doctor and nurses at SDMC, they have seen it in post transplant patients before, a possible reaction to the dye ingested during the procedure. 

Bone marrow results

The bone marrow results are good! No traces of leukemia cells which means Min Ser has responded well to the transplant.

On the other hand, he has contacted a viral infection, commonly known as shingles (herpes zoster). But thankfully, it was discovered early and is under control with anti viral medication. Seems it does happen to post transplant patients, plus Min Ser was having flu syndromes before this happened.

Jo is also sick, down with cough and flu. Plus she can't stay with us as shingles can cause chicken pox too. So she'll be with my in laws until he recovers.

Thankfully I'm still healthy! :) Praying I'll continue to be so and hubby and daughter recovers soon.

Day +101

We've passed day 100! This is the first milestone reached! Next would be 6 months!

Min Ser had his bone marrow tap today. This is to draw some fluids from his bone marrow to monitor how well he has responded to the transplant. The test will be able to determine how well Sue Min's stem cells has grafted to Min Ser. Test results should be out in 10-14 days.

His cyclosporine medication was reduced from 200mg to 175mg today due to indication of high cyclosporine levels in his blood test. Too high level is not good for the kidneys and too low level can lead to rejection. Thus the dosage has to be just right for each individual.

Day +93

One week to go to day +100! Whoopee! His weekly results have been good so far. Min Ser is quite up and about now. He has driven to work a few times now, on top of him working from home. He has managed to catch up with a few friends as well as attending church Sunday services.

Besides day +100, there is another milestone next week. Next Thurs, 31 Oct, a bone marrow tap will be done and samples taken to test how well the transplant has taken effect and will tell if his current state is truly cancer free.

Let's continue to pray for a clear diagnosis and confirmation that the new stem cells have grafted well into his bone marrow, as well as no more trace of the old defective stem cells.

Day +75

Here marks day +75! Three quarters to day +100.

Min Ser has been getting better by the day. He now takes short trips out to our parent's place and we also occasionally eat out some days (not too crowded places, and food has to be well cooked). He is officially working from home and he plans to go back to work in December.

We still go to Ampang Hospital weekly for his check up. His counts has been good!

Day +50

It's been a while since I've posted an update, but felt like today is a good day to post a milestone. Day +50, halfway to day +100!

Why the long hiatus? A mixture of being busy + procrastinating (lazy lah). Though all in all Min Ser's progress has been good, albeit a few down moments (allergy, itchy, skin peeling) which have now pretty much subsided. He still feels tired some days and can't really exert himself much. His appetite is good, though sometimes his tummy still feels out of sorts. If I were to plot a graph of how he feels in general, the line would go up and down from day to day, but the overall trend would be going upwards.

So yeah, do continue to pray for complete recovery and for him to slowly get back to the swing of things. His blood counts has been good, equivalent to a healthy persons. Doc says the bone marrow graft is strong for his counts to recover so quickly.

Latest results will be at his next check up this coming Thursday.

Day +28

It's been 28 days post transplant and from yesterday's hospital check up, according to Min Ser's blood counts he is doing well. Though physically he still feels odd... his sense of taste is a bit off. Sweet things don't really taste sweet and some food can taste rather plain. Besides that, his digestive system is not optimum, he at times feel uncomfortable after eating.

He is also having slight rashes on his palms and face suspected to be an allergic reaction to an antibiotic given (bactrim). He experienced this before, the week he entered hospital for transplant. At that time it was only suspected that it may be caused by this drug, but since it has happened again, it is quite confirmed. He has stopped taking this particular drug since yesterday and we are to monitor if the rashes is contained in the same areas. This is because rashes caused by skin GVHD also looks the same.

All in all, things are looking ok. He still eats well and rest well (except for yesterday due to the itch on his palms).

Jo and I are doing well. She has been back at home ever since we returned from hospital. She's been going about the house as if she never left. And I'm busy making sure she keeps out of trouble and don't kacau her daddy too much. At the moment she's being entertained by Barney. But not for long... ok. Got to go.

Day +20

We're in Ampang Hospital for Min Ser's first follow up session. Doc says his blood counts are good, and we will only need to come in once a week instead of twice a week. Yay!

Today's counts:
WBC: 4.8
HB: 11.8
P: 213

Discharged on Day +16

Just posting to inform all that Min Ser has been discharged from hospital! Yay! We just arrived home a couple of hours ago. I am so so so elated it's just before our baby Jo's 2nd birthday this Sat!

His blood counts showed good signs of improvement and he can eat solid food and swallow his medication.

He still feels tired and weak but he is overjoyed to be out of hospital. Truly it is a huge milestone to be fit for discharge post transplant.

We will continue to go back to hospital every Monday and Thursday for the next 2.5 months for follow up. During that period he will have to avoid going to crowded places.

He also has to take cyclosporine (anti rejection tablets) at the same time everyday for the next 5.5 months. We chose 10am and 10pm. Very important! So we've set multiple alarms to help remind us.

So yeah, it is a relief to have passed this stage, praying that the worst is over. We are truly grateful for all the prayer support and words of encouragement, and are truly thankful to God for having brought us thus far!

Day +14

It's been two weeks since the transplant. He is improving slightly. Still hurts to eat and his digestive system is hardly optimum. It's been a week since he has eaten or drank anything so slowly getting his system used to it. He had a little tau fu fah yesterday & chrysanthemum drink. He also had some cereal with milk this morning.

He has some slight diarrhoea but according to Dr Chang, it's quite normal. His blood counts has gone up pretty fast. Pain is more tolerable now and morphine level is reduced to 0.5ml.

Today vs (yesterday's) counts:
WBC: 2.1 (1.6)
HB: 10.4 (10.1)
P: 64 (46)

Day +12

Two pints of blood were transfused today as his hemoglobin counts were low. He feels slightly better today and drank a little bit of soya bean. Still hurts to drink. Morphine has been reduced to 1.3 ml.

Today's counts:
WBC: 0.7
HB: 6.3
P: 25

Day +11

Doc prescribed another two days of TPN. Monday onwards he should try to drink liquids on his own.

It seems the mucositis is less severe now. Min Ser says it's less painful, but still too painful to drink. Morphine amount lowered to 1.5 ml this morning.

Based on his blood count results, his condition should improve within the next few days.

Today vs (yesterday's) counts:
WBC: 0.6 (0.4)
HB: 8.0 (7.9)
P: 22 (21)

Day +10

He still finds it very painful to drink. Impossible to swallow solids. He'll still be on TPN (the 'milk') today.

The pain was quite unbearable last night and this morning. So this morning, doctor raised the morphine level to 1.7 ml from yesterday's 1.5 ml. She did mention that his white cell counts are going up causing inflammation which explains the added pain.

He also had a fever of 38C. After taking Panadol soluble and the increased morphine dose, the pain is now more tolerable.

Well, thankfully there is one good news for today. His white cell counts are going up.

Today vs (yesterday's) counts:
WBC: 0.4 (0.1)
HB: 7.9 (7.5)
P: 21 (34)

Day +8

Not much progress since the last update. He's not in more or less pain, pretty much status quo. He did feel like drinking juice and soya yesterday, but not today.

He is still being given 'milk' via IV. Yes 'milk' within quotation marks. When you ask a nurse "what is that" and she says "susu" apparently she doesn't literally mean milk. I don't think it's safe to inject real milk directly into a person's blood stream. It was probably the most convenient answer which doesn't require too much explanation.

Anyway, I did more research and the accurate solution he is being given is TPN Kabiven. TPN for Total Parenteral Nutrition. It contains a balance of various substances like amino acids, dextrose, lipids, etc. It should be enough to sustain even if he doesn't want to eat or drink. He will be on TPN for another next two days if needed.

Today's Counts:
WBC: 0.3
HB: 8.2
P: 32

Day +6

He's still in pain. Mucositis is at a severe grade 4. Morphine now at 1.2 ml per hour (max he can take is 2ml) but trying to avoid having a higher dose as it can cause nausea.

Dr Chang mentions don't have to eat or drink. Milk, water and meds can be given intravenously.

For some reason, I find the concept of milk given intravenously highly intriguing. Vitamins are added to a huge (biggest I've ever seen) IV bag of milk (maybe ensure?). Total 1206 ml, 800 kcal, which will be given over a span of 12 hours.

His platelet count is low, cracked and dry lips starting to bleed. Platelets to be transfused once ready. He managed to sleep off most of the day but he's now playing a video game on his laptop.

Today's counts:
WBC: 0.2
HB: 8.6
P: 18

Day +5

Mucositis is getting worst. Very painful. He now can't really talk. Imagine having an ulcer but this time all over the mouth and throat and possibly down the GI tract.

Things like soft pear and watermelon is painful to swallow. So purely on liquids now. Light cream soup with blended veggies, soya bean drink, ensure choc milk, chrysanthemum and barley.

Doc says it will last about a week. Pain killer given (but only slightly effective) is small doses of morphine in drip

Today's counts:
WBC: 0.1
HB: 8.4
P: 35

Day +3

He is starting to have mucositis - inflammation in the GI tract, resulting in ulcers on the tongue, mouth and throat. No treatment, just pain killers if he cannot take the pain. He also needs to observe proper and frequent oral hygiene and drink lots of water. He now finds chewing discomforting. So will eat softer food starting tomorrow.

He also had one episode of bad diarrhea and slight vomiting this afternoon. But overall he is not weak. He still moves around the room on his own and doesn't have to lie down.

Though this is all expected effects of radio and chemo + post transplant patients, we were hoping he may be spared the worst of it. So yups, praying the ulcers go away really soon.

Today's counts (down trend overall):
WBC: 0.2
HB: 8.7
P: 60

Day +2

So far all is well, Min Ser is fine today. His red blood count are on the uptrend. White blood and platelet are coming down a little. But he feels ok as a whole except for a sore throat which makes it slightly hard to swallow (a side effect of the chemo). Otherwise he is eating and drinking well.

Sue Min went home yesterday afternoon. She feels well post collection and the removal of the femoral line was painless even without any anesthetic.

So as of now, still waiting. He will have small doses of chemo (via syringe) on day +1, +3, +6, +11. So looks like we'll be here for another 10 days at least.

Transplant (Stem Cells Infusion) Done

Sue Min's stem cells were infused to Min Ser at 3.45pm and done in 2 hours. It's basically like blood transfusion, but of a lighter red colour (more translucent). No averse reaction during transfusion. Total collection was 6.87 mil. So yay, above the 5 mil targeted!

Post transfusion days start with a (+). Ie: starting tomorrow is +1. Now to wait for his counts to go down (+1 onwards) and when Sue Min's stem cells engraft well, his counts will pick up again (+10 to +14). Once his white blood cell count reaches <1.0 and he feels well, he can be discharged.

Post transfusion, 3 months, 6 months and 1 year are milestones. So the one year goal is to reach day +365 in good health!

Counts as of today:
WBC: 0.35
HB (red): 8.9
Platelet: 77

Still Waiting

There's no transfusion of stem cells/ transplant today. Sue Min has to stay another night for a second collection tomorrow. Collection amount was 3.27mil stem cells, but for Min Ser they want to target for at least 5mil stem cells.

The stem cell collection process was about 5 hours which consists of 12 cycles. Sue Min had to be bed ridden for that time frame where the machine collects certain amounts of blood from her femoral line, separates the stem cells and return the other parts of the blood to her. She is feeling ok but tired.

Min Ser is doing better the pass two days. Less nauseous, able to eat decent amounts, and his counts are still not that low yet. So yeah, so far so good. Just need another 2 mil stem cells tomorrow!

Good job Sue Min, you can do it!

Last Day of Chemo

As of today, Min Ser has gone through 6 sessions of radiotherapy and one dose of chemo (cyclophosphamide 4300 mg). This afternoon will be his last dose of chemo (post transplant will only be little doses of chemo via syringe).

He is perpetually nauseous, weak and tired. No desire to eat much, but he still tries to drink soup, choc milk, eat some nestum and apples (peeled).

He has vomited 3 times since radiotherapy started. In comparison, he has only vomited once during the first 3 cycles. He did not sleep well due to the nausea. We have asked doc to prescribe sleeping meds for tonight. Hope he can rest well and stop feeling nauseous.

There will be no chemo tomorrow, just rest and wait for the transplant on Monday (that is if they manage to collect 3mil - 5 mil stem cells). 98% of the time it'll be enough. Usual collection is 7-8 mil. The last collection they had was a record 20mil! Seems he was a big guy and maybe a bit overdosed on GCSF.

So ya, lets pray for enough stem cell collection and for Min Ser to stop feeling nauseous so he can rest and eat well.

1st Day Radiotherapy

First of all thank you all for your prayers for us and Sue Min too. She has recovered and will be coming into hospital this Thursday for her first GCSF shot, and will be traveling to and fro from home daily until Sunday, when she will stay over for the transplant on Monday. Some of the side effects of the GCSF shots are body aches as the body is stimulating production of stem cells. Pray that she will have safe journeys to and fro from home to hospital, and she won't experience the aching side effects.

Today was Min Ser's first day of radiotherapy. We arrived Hospital KL at 8.30, and his first session of radio was from 9.30-10.30. Though according to Min Ser total exposure time (to radiation) was approximately 10 to 15 mins. There are 2 sessions a day, 6 hours apart. So in between he has a make shift room and bed to rest in.

The effects of radiotherapy was very evident and quick. Right after his first session he felt really weak, had a bad headache and was nauseous. He had to lie down (though couldn't really rest due to the headache). He says it was worst than chemo, especially since he could feel the effects so quickly. It seemed like 10 mins of radio felt as bad as 3 days of high dose chemo. With 2 days (4 sessions) to go, pray he will have the strength to go through it and that he will recover quickly in between sessions.

He managed to catch some rest before dinner, ate a fairly decent amount, and mentioned he felt slightly better, but still very tired. He's resting again now.

Hickman Line In

The procedure to insert Hickman Line this morning went well. A relatively straightforward procedure but as with all procedures there is always a slight risk. But it was quick and Min Ser is feeling ok. That is until the anesthesia wears off... but he'll be given pain killers to manage any pain.

He was on local anesthetic so he's not too drowsy. He will soon learn how to keep the incision areas clean to avoid any infection. The Hickman Line will be used for all future infusions and drawing of blood.

We have also been to see the radiologist in KL GH for consultation and measurements. All set for Total Body Irradiation (TBI) on Tuesday to Thursday.

Do pray for Sue Min though, as she is unwell, down with diarrhoea since yesterday. Pray she recovers quickly and completely as she rests at home. It will be tiring as a donor and also to lower the risk of any contagions being passed on to Min Ser. May she be in the peak of health in time for the GCSF shots (25/7-28/7) and transplant (29/7). Get well soon Sue Min, take care.

BMT Schedule

Dear family and friends,

We attended a counselling session at Ampang Hospital today, to prepare everyone for Min Ser's bone marrow transplant. 
Was a very informative session with a lot of details, will try to summarize below:

12 July
- Admit to Ampang Hospital Transplant Ward (Ward 7D)
- This is a special ward in a highly controlled environment; even care-givers cannot use the same toilet as the patient, and cannot eat in the same room
- Anyone entering the ward has to go through 2 checkpoints, must wear a mask and apron, and change their shoes
- Strictly no visitors allowed; only one immediate family member at a time
- Food brought in from outside the ward needs to be checked by the nurses
- Because of the severity of the transplant regime, there will be one nurse dedicated to 3 patients max (this is even better than most private hospitals)

15 July
- Consultation and preparation for radiation therapy at KL General Hospital
- Interestingly, Min Ser won't be able to use soap or any lotion for 2 weeks (to avoid any skin reaction due to the radiation exposure)

18 July
- Insertion of Hickman Line in Min Ser
- Will be used for the next 3 months; inserted near his neck and used for all IV purposes

23 to 25 July
- Commencement of radiation therapy
- Will be a full body irradiation, so expected to have quite strong side effects

26 to 27 July
- Commencement of high dose chemotherapy
- This will be the last and strongest dosage (to date) that will permanently destroy his stem cells, just prior to the transplant
- Praying that Min Ser won't have too severe side effects...most patients do

25 to 28 July
- Preparation of donor (Sue Min) for stem cell harvesting
- She will be taking GCSF shots daily to increase the body's production of stem cells

29 July
- Bone marrow stem cell infusion
- This is the actual 'transplant' of Sue Min's stem cells into Min Ser
- 3 million of Sue Min's cells will be harvested in the morning, and if all goes well, will be transplanted in the afternoon to Min Ser
- Successful grafting of the donated stem cells will be the only way for his marrow to start producing blood again
- The following 2 weeks will be the most high-risk period
- Main focus will be to combat infection and to prevent rejection of the donated cells (GVHD: Graft Versus Host Disease)

Mid August
- Expected date of discharge from hospital (if no complications)
- Strict quarantine at home for next 3 months (still high risk of infection and GVHD)
- No exposure to direct sunlight (apparently UV rays can trigger GVHD)
- No exposure to crowds (visitors discouraged)
- Visit hospital twice a week for tests and monitoring

Mid November
- Critical period over; visit to hospital once a week for next 3 months
- Recuperation of cells expected, and immune system starts strengthening
- Visitors allowed at home, but monitored

Mid February
- Hopefully back to 'normal'; visit to hospital once a month
- Low risk of infection and GVHD at this stage

End of Third Cycle Chemo

We are finally able to leave the hospital today. Min Ser's blood counts are recovering and he was discharged today. So yeah, we've successfully gotten through the 3rd Cycle of chemo!

What this means is that we will have a few weeks break before going back mid July for the next crucial stage that is THE Bone Marrow Transplant. In preparation, he has had his lung function test and dental check up. We will be going into Ampang Puteri for a scheduled echo test on Tuesday and then a counseling session (25/6) regarding transplant week after next.

We will find out more regarding the transplant from the counseling session, but from what I understand there will be a few days of conditioning which involves high doses of chemo that will severely wipe out/weaken his stem cells allowing engraftment of new healthy stem cells (from Sue Min). According to one of our doctors this procedure will take an average of 3 months where he will be strictly observed and given immunal suppressants and anti rejection drugs.

Even now our prayer is that the grafting of new cells will be smooth and successful without severe reactions. After the 3 months he will be able to slowly recover and get back to his daily activities, though the one year period after the transplant is also a very important time frame, as this will be the real test as to the true success of engraftment.

So do pray for us (prayer request updated here) as we continue to take this journey one step at a time, each day as it comes. To date, I am just truly thankful that we have gotten to this stage by God's grace and with the strong support of friends and family. It is encouraging whenever we get random messages reminding us that we are remembered and that you all are praying for us.

Third Cycle Day 16

Chemo day cycles are based on the 1st day of chemo. Thus it's day 16 since chemo started. First 5 days of chemo, day 9-10 the counts will start dropping, day 13-14 counts will be at the lowest, and by day 15-16 the counts should start going back up, platelets usually the last. By day 21-23 most people would be able to go home. Though with a higher dose regime, there will be more days with low blood count.

We have yet to see his counts since two days ago, when his counts were all low. White blood cells counts were at 0.0. He has been having fever of varying temperatures in the past three days with no signs of infection. Medication consists of the usual paracetamol, antibiotics, anti fungal and shots of GCSF.

Physically he is tired but mobile and able to eat pretty well. Doc says it's likely it'll take another week till the counts are considerably normal.

Low Blood Counts

Just a quick update. Min Ser has been back in hospital since Sunday. Blood counts are low. He has had two blood transfusions and one platelet transfusion. He has a slight bump under his skin, probably nothing serious but a biopsy was taken this afternoon. Besides that he is alert, eating well, and sleeping well.

Counts as today (before platelet transfusion)
Hemoglobin: 8.9
White blood cells: 0.1
Platelet: 16

Short Home Leave

Min Ser is on home leave for a few days. So yups, in case some of you are wondering about the absence of any new posts, it just means all is well. :)

He'll be going back to hospital on Sunday, when his blood counts are expected to start dropping.

PET Scan results

On a high note, Monday's PET Scan result shows extramedullary tumours have reacted to chemo. The high activity areas (tumour areas) now show normal activity except for 2 areas with slight activity (but report did mention that it could be due to inflammation).

In short, the tumours found in different parts of his body in the first PET Scan have pretty much disappeared (broken down).

This third round of chemo will ensure a more thorough wipe before the next stage that is the bone marrow transplant.

Second Day of Third Cycle Chemo

This cycle's regime is 5 days of fludarabine 30mg, followed 4 hours later by Cytarabine 2000mg (one dose, 4 hours). In addition, he gets one 300mg shot of Filgrastim (G-CFS).

He had headache/migraine since yesterday which spiked at midnight last night till 11am today. He didn't manage to get any sleep, despite being given paracetamol and a sleeping pill.

Since morning he had high fever (39.8), extreme headache and accelerates heartbeat (145). He was given oxygen + pain killers + trauma med. Followed by ECG (heart beat showed to be fast but normal). He was given sleeping med at 11am and has been sleeping since. Temperature is now back to normal. Now just tired from lack of sleep.

Back To Hospital

We enjoyed our break, and now it's back to the hospital. These past few days have been spent in and out 3 hospitals. I feel like I've become so familiar with the different ones.

Monday was SDMC for 2nd PET Scan (results should be out by tomorrow or day after). Min Ser was initially planned to be admitted on Tuesday to Ampang Hospital and to be sent to Selayang Hospital the day after.

But we were informed that there were no beds available till Wednesday so we were requested to go to Selayang on our own, yet we still had to go into go into Ampang Hospital on Tuesday to get official letters and a precautionary blood test. Thankfully his blood counts are ok. The concern was that if his platelets were low, he would require platelet transplant before the stent removal procedure the next day.

So yes, 3 different hospitals, 3 days in a row. Today's procedure in Selayang was to remove the plastic stent that was placed in Min Ser's obstructed bile duct in March. (The very obstruction that started the whole chain of events). Good news, there is no longer any obstruction in the bile duct (sign that that particular tumour has shrunk or died?) though the lesion at the duodenum is still visible, but smaller. Looks like only the PET scan results will show a clearer picture of how the tumours responded.

Tomorrow a bone marrow sample will be taken, and once the results are consolidated, the team of doctors will decide on the 3rd cycle chemo regime.

Going into this cycle with more confidence and experience. Really thankful that the past two cycles though tough, it went relatively well. Praying that this cycle will go smoothly as well, and that any residue anomalies will be completely exterminated.

So thank you all family and friends for your constant support, prayers, encouragement, and delicious food! We really appreciate your love and we know this journey would have been a lot tougher without you.

Also want to thank God for blessing us with good doctors. Throughout the different hospitals, we have met and been treated by so many caring, knowledgable and experiences doctors. It's really comforting to be in such capable hands.

The Healing Process (end of second cycle)

We were given the go ahead for Min Ser to go home today. Which came as a pleasant surprise. This means he is done with the second cycle!

A PET scan is scheduled for 20/5 (Mon) to see how the extramedullary tumours have responded to two cycles of chemo. He will then be readmitted to Ampang Hospital, 21/5 for the third cycle of chemo. His stent will be scheduled to be removed in Selayang Hospital a few days after admission.

I would say the second cycle was somewhat tougher on him. Theoretically it was expected due to the higher dose chemo, but experiencing it is a whole different matter altogether. He went through extreme weakness and lost of appetite, pain, as well as two bouts of very high fever. There were days when he seemed so well, and then the next day he would be very lethargic and weak. The ups and downs were sometimes gradual, and at times quick and extreme. I am reminded that the process of healing and recovery takes time and patience, with it's ups and downs. It is human nature to want good things to come about fast and instantly. But oftentimes, patience is needed.

Inevitably, I can't help juxtapositioning our experience with what our country is going through now. The aftermaths of what some call the closest election in Malaysian history may seem bleak now, but in due time, I believe that true reconciliation, healing and recovery will come to pass.

Upon reflection, spending so much time in the hospital has truly blessed us with the opportunity to be thankful for what the present government is doing (not to say an alternative government would do any less). I have to commend the awesomeness of the team of doctors and nurses in the haemotology ward in Ampang Hospital. Their experience, quick action, plus their care and concern, rivals (in some area surpasses) any private hospital we've been admitted to. I see this care given indiscriminately to every Malaysian from various backgrounds. I think this is because there is a clear sole purpose, and that purpose is to see healing take place.

Under Observation

Seems like his fever is under control. Within the 37C range. A blood culture was taken to see if there are any signs of infection. He is under antibiotics (Tienam) and soon to be on anti fungal (ampho B) as well.

A new observation, it seems he may have developed an allergy to Tazocin (antibiotic). We discovered this when Tazo was administered around midnight via drip and he experienced shooting pain in his left arm (felt like his nerve) from the tips of his fingers to his shoulder. Pain level 8 (1 - 10). This was not the arm where the needle was inserted. We quickly switched off the drip and the pain subsided. It is a rare side effect and to be on the safe side he won't be prescribed Tazocin anymore.

Tomorrow his blood counts will be checked, so as of today just rest while on drips.

Platelet Transfusion Reaction

Min Ser has had two platelet transfusions this week (the forth since the first cycle). One on Tuesday evening and one this morning. His platelet counts were low Tuesday morning along with two occurrences. A broken blood vessel in his right eye since Monday night (part of his eye is blood shot red, though it doesn't hurt or affect his vision, it will take a few weeks to disappear completely) and his gums were bleeding slightly before tranexemic asid was administered followed by the first platelet transfusion. He was weak and tired but felt much better after Tuesday's platelet transfusion.

Doctor's have mentioned it before, but today's transfusion is the first time he's experiencing a reaction. After the transfusion his temperature started shooting up after noon. He was shivering and it subsided after his 1pm paracetamol dose but started again around 5.30pm and subsided again after a 2nd dose. His fever climbed from 37.9 (noon) to 40.3 Celsius (evening). After the shivers he felt like his whole body was burning. Poor dear, he is finally asleep now. Temperature now at 38.7. Nurses say nothing to be given besides paracetamol and drips. He just have to drink more fluids and apply Coolfever until his temperature comes down. Hope this fever will pass quickly.

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Today's blood count (before platelet transfusion)
White blood cell (WBC): 0.2
Platelets: 37
Hemoglobin (HGB): 7.8

Normal Counts
WBC: 4.25 - 10.25
P: 150 - 400
HGB: 13 - 18

It's been a good week

Just a brief update! Things have been well. Monday to Wednesday Min Ser was on home leave and he enjoyed the break immensely. Blood results on Thursday shows that his red & white counts + platelets are low. But besides the numbers he feels well and has a good appetite. Now just waiting for his counts to go up again.

Feeling Better

Thank you to those who have stood by us. A friend reminded me that there will be ups and down. Though looking forward to the final down, then up up up all the way. Yay!

Min Ser is feeling much better today though still a bit weak. Appetite is improving though he still can't eat too heavy stuff. He's been dreaming and talking about mee goreng, mee rebus, nasi lemak and big breakfast. Now just have to wait for his system to catch up with his imagination.

Fever is fairly normal now. Slight fever on and off. Doc says not likely to be due to infection as his blood counts are not so low yet. So yeah, now it's the wait for blood counts to drop and come up again phase.

Prayer Request

Please pray for Min Ser. Currently having high fever 38.6C and he's really feeling uncomfortable.

This morning he was feeling better, but fever just started. Pray that it'll subside and no infection.

Day 3 Second Cycle

The past few days has been tough on Min Ser. This time he feels weaker and very tired. He pretty much sleeps all the time. Nauseous and not much appetite, but no vomiting. He has been taking clear soup, milo with crackers, porridge, 100plus and coconut water. He also has stomach ache on and off, could be reflux or gastric related. Slight heart palpitation, but doctor says it is not uncommon after administering the stronger chemo, Idarubicin.

This cycle the chemo regime is 2 doses of Idarubicin 22mg (orange colored liquid) and 8 doses of cytarabine (Ara C) 1500mg, 1 dose every 12 hours. Good thing this cycle is shorter. Four days compared to 8 in the first cycle. Three more doses of Ara C and no more chemo till the next cycle.

He just needs to hang in there.

Good News

Bone marrow results looking good. No abnormal white cells can be seen via microscope. The naked eye is only sensitive to see anomaly from 5%. A flow cytometry will be able to determine the accurate percentage. Though the chemo regime remains the same even if it is 0% to 1% abnormal white cells.

Regarding his extramedullary tumours (tumours outside the blood), a PET scan will be done after this second cycle to indicate how it has responded to the chemo. The stent inserted in his bile duct is also planned for removal after the second cycle.

What we hope to see after the second cycle is smaller or no more cancerous activities and tumours in the different areas of his body. Ie: duodenum, bile duct, left shoulder and thymol gland.

Second good news of the day. We were admitted to a double bedded ward yesterday but moved to a single bed ward today! According to the nurse, "Sepatutnya bagi orang lain, tapi rasa lebih baik bagi kamu, sudah biasa kan." (The room was meant for someone else, but we felt it better to be reserved for you, since we know you better).

Thank you Lord for your continuous grace and favour :))

Back for Second Cycle

We're back at Ampang Hospital for 2nd cycle of chemo. Bone marrow test was taken and chemo regime to start tomorrow.

This round will be a stronger dose chemo compared to the first.

As before, praying against any uncomfortable side effects or infections. May the bone marrow results show good response to the first round of chemo too!

End of First Cycle

Min Ser's blood counts and immune system is on the uptrend. No fever since yesterday. So he's been given the OK to be discharged home. He was so happy, after being in hospital for almost a month. He gets to enjoy the next couple of weeks at home, but still advised to avoids crowds especially during the first week. So yup, this means he has finally gone through the 1st induction cycle successfully! Yay!

Next cycle starts in 2 weeks. It will be more intense, so lets pray he will get through the upcoming cycles smoothly.

Still In Hospital

Min Ser is still in hospital with fever on and off. Today was at a high of 38.9. Prob due to some form if infection. Doctor's are taking great precautions to prevent any complications by administering high dose anti bacteria and anti fungal meds on top of the usual panadol.

Let's pray that the fever subsides completely as he is feeling quite uncomfortable due to it.

God is good...

Today I find richness in one cliché I used to find fun and cute in church. For instance when the worship leader or pastor shouts "God is good" and the congregation replies "All the time" and vice versa.

When we heard that Sue Min was a full match for Min Ser as a bone marrow donor, my first reaction was just "Wow!". I was hoping it and yet at the same time all I could feel was "Wow!".

So maybe 1 in 4 is not unlikely odds. But I was never one to feel "lucky" when it comes to odds and probability. I hardly 'tembak' correctly in a test even if it was down to C or D. And those were odds of 50/50. And both Min Ser and I have never ever won a lucky draw in our lives. Be it that awesome flat screen TV or even a RM50 Jusco voucher.

But this miracle makes up for all the lucky draw non-wins and unsuccessful exam 'tembaks'. This supercedes all those now superflous disappointments. This is exactly when I want the odds to be in our favour.

Truly truly "God is good all the time, and all the time God is good!"

Bone Marrow Match!

This just in. HLA typing results are out! Sue Min is a 100% match to Min Ser. For a 1/4 odds this is very very good news. Praise God!

Day 19 First Cycle

Red & white blood cells & platelet counts are low. Second platelet transfusion will be done today.

He currently has a mild fever (37.5). If it subsides and blood counts are on the uptrend he will be discharged on Thursday to rest at home for a week plus. His counts were on the up day before yesterday, but was lower on today's test.

His hair has started dropping. He plans to shave it all off once he is discharged.

Regarding chemo, the second cycle will start 2nd week April (subjective to the blood count results), date scheduled to come back to hospital is 9th April.

Progress Updates

Min Ser is doing well so far. Headaches are less or not so much a concern anymore. The diarrhoea was just for a day, so that's good. He is eating well. Good appetite. In case some of you are wondering, yes he still has his hair. Still as good looking as ever. Not to say a bald Min Ser would look any worse though.

His blood counts have been steadily dropping. White blood cells are almost gone. Platelets are low. He had a platelet transfusion today. Red blood cell counts are normal.

We did ask if donors were needed. The hospital was pretty clear that they had more than enough. So no worries there.

Regarding HLA typing (to find a bone marrow match). Sue Min (Min Ser's sister) had some of her blood taken last Thursday (14/3). The tests will take about 2-3 weeks. So we should know if she matches soon enough. Will update on that once we know.

Blood Counts Dropping

First round of chemo IV drips ended last Saturday. Now it's the wait for Min Ser's blood counts to drop, which has already started. It is expected for his counts to be at it's lowest on Tuesday to Thursday. This will last for a week or so before it starts picking up again. Once that happens and his counts are back to normal, he would have officially 'survived' the first cycle (induction) chemo.

As of today he is feeling very weak and tired. He has a really bad headache (couldn't sleep last night). This could be due to last week's lumbar puncture. But doctor's are monitoring this development as well, as the chemo drugs given were strong enough to penetrate the Central Nervous System and the brain. Besides that, he also has slight diarrhoea.

I'm praying that he will recover from these ailments and that he may be able to rest well this next couple of weeks.

A Picture of the Enemy

Above is a picture of typical myeloid leukemia cells - apparently thousands can be found in a few samples of blood of a leukemia patient.

The way I understand it (without having the qualification of high school biology), is that these cancer cells are actually mutated white blood cells.  White blood cells are supposed to be our body's defense system; due to reasons yet inconclusive to medical science, the white blood cells in an AML patient have started mutating and are causing damage instead of protecting the host.

In my case, the cancer cells have been found to be extremely aggressive, forming rapidly also in areas outside the bone marrow as detected via the PET scan.

The doctors have responded to this development with appropriate force and fortitude, with a higher dose chemo regime and expedited consolidation plans.

We will cover this also with force and fortitude, in our unwavering prayers.  More than ever before I am convinced that God's Name will be glorified in all of this, and He is working out His purposes, come what may tomorrow or the day after.

We have a God who fights alongside us, and Christ will be praised at the end!

 Psalm 18:30-36
"As for God, His way is perfect;
The word of the LORD is proven;
He is a shield to all who trust in Him.
For who is God, except the LORD? 
And who is a rock, except our God?
It is God who arms me with strength,
And makes my way perfect.
He makes my feet like the feet of deer,
And sets me on my high places.
He teaches my hands to make war,
So that I can bend a bow of bronze.
You have also given me the shield of Your salvation;
Your right hand has held me up,
Your gentleness has made me great.
You enlarged my path under me,
So my feet did not slip."

Intensifying Chemo

Lumbar puncture results were out today but results were inconclusive. It showed signs of cancer cells in the spinal fluid but that could be a result of contamination from blood cells which also was found in the sample.

To be on the safe side, Dr Chang and his team has agreed to intensify the chemo beginning tomorrow to ensure it is strong enough to purge any potential cancer in the spinal cord and brain.

They will also prescribe antibiotics and anti fungal medication since the intensified chemo means a longer recovery period. This is done to reduce risk of infection during this stage. Dr Chang recommends that the HLA typing be done ASAP to find a suitable bone marrow donor. Min Ser's sister, Sue Min will be coming in tomorrow morning for the test. If no match is found we will proceed to check International Donor Registry.

Do keep praying for the treatment to go as planned and for Min Ser to be infection free in the next two weeks.

PET Scan Results

Dear friends and family,

This is Min Ser, decided to contribute to the blog too - Jen Ling is out getting lunch for us. It's day 5 of  my first cycle of chemo here in Ampang hospital.

PET scan results came back yesterday - not too encouraging, at it showed signs of abnormal cells in my back vertebrae and sternum area.  Consistent with the back aches I have been having for the past month.  The PET scan report suggests chloroma could be developing in these regions as well.

Just to be safe, the doctors will perform a lumber puncture this afternoon to extract some spinal fluid to run some tests.  At the same time, they will administer some chemotherapy straight into my spinal column to protect my central nervous system.  Apparently the needle is small (er) these days...we'll wait and see if that's true or not =)

Doctor mentioned the next 2 cycles of chemotherapy will be stronger and more intensive - we all were under impression that the first was the strongest, but apparently not so.  Maybe because of the PET scan results?  It will be a different regime (not DA 3+7), but I don't know the details yet.  The chemo should be strong enough to break down the various tumors; there are options for radiotherapy if there are some persistent ones.

To be honest, was a bit down when I saw the PET scan results - even the nurses mentioned I 'nampak kurang ceria'.  I guess the flurry of unexpected negative news is hard to handle. 

I woke up this morning feeling God saying 'Trust Me' - it was a night of random dreams and half-sleep, but was good feeling His assurance...all things are still in His control.  There was a chorus in my head 'When mountains fall, I'll stand, by the power of Your hand...'.  God knows how to encourage and He remains a BIG God.

Looking at JoJo's pictures cheers me up a lot too - hope I can see her soon.

I want to say a big thank you to everyone who is praying and sending us your encouraging words of support.  I have never felt so blessed by so many people before.

And also to those who are taking the time and effort to cook for me - just a request here to give me standard Malaysian food, no need for 'bland sick person diet' =)

My care-givers by my side (my wife, sister and cousin) are true heroes.

We'll keep pressing on...

Min Ser
p.s. Jen Ling just came back with roti telur - puji Tuhan!

Second Day of Chemo

It's been one day of chemotheraphy, administered through IV drips. So far so good, save for a few hiccups at the beginning. Chemo started yesterday afternoon with the first dose of Daunorubicin 60mg/m2 (red transparent liquid). He didn't feel comfortable. Slight numbness in the hands and it hurt a little. After changing to the second line (different area on his left arm), the feeling of numbness still persisted and his arm developed a slight rash. They injected something to help the rash and ice to apply on it. The line was changed to normal saline for a while, and they lowered the rate of the drips. After that it was ok.

After daunorobicin, nurses changed it to clear coloured cytarabine (Ara C) 1000mg/m2 for 12 hours. This will be the regime for the first 3 days.

As of this morning, he has experienced slight nausea (controlled with anti vomit meds) and slight lost of appetite. But this is to be expected. Overall, a good first day I would say.

Chemo First Cycle

Dear friends and family, Min Ser will start his first cycle of chemo tomorrow morning. The first cycle (induction) is the toughest and most crucial.

Each cycle for Min Ser consists of one week of treatment. And second and third week of monitoring and recovery. After the first week he will have low counts of white and red blood cells and platelets. So that's when he will be vulnerable to infection or bleeding.

If all goes well, he will be allowed home for one week, before starting the next cycle the week after.

Please pray. For specific points please refer to the side bar link on 'prayer requests and needs'. Thank you.

PET Scan @ SDMC

Min Ser is undergoing a PET (positron emission tomography) scan right now. PET scans can help show up a cancer. This will help docs to ascertain if the cancer has formed anywhere else besides the 2 areas already identified (duedenum & bile duct).

It is rare in Leukemia patients for tumours to form outside the blood (extramedullary). Even rarer for it to form first before showing in the blood. Like in Min Ser's case. Thus this scan is deemed important to undergo before chemo starts.

This scan was initially arranged to be done in Putrajaya Hospital. But we were told yesterday that the earliest slot available was 13/3. A whole week later. Any earlier would be subject to cancellation. We were advised to do it earlier in SDMC.

It turned out well too as his bone marrow sample slides are here in SDMC, and if not prepared and collected today, I'm not sure how much longer it would have taken to get from the lab here to the lab in Ampang Hospital. When I went in to the lab to check this morning, apparently a request for his slides has not been made yet. Sigh, and I thought the request would have been made Monday itself, if not Tuesday. It is always proven true that it's important to inspect what we expect.

On a lighter note, I would like to mention that we travelled here in an ambulance! It was quite exciting. Min Ser is still mobile so he didn't have to sleep on the stretcher. We left Ampang hospital at 7am and arrived right on time at 7.30am. The ride was bumpy, no suspension, the seats felt like it was going to fly off. Almost like an amusement ride, but sometimes more exhilarating than amusing. The driver drove like I would expect an ambulance driver to be driving. If it was a life and death situation, I think I would have arrived on time.

We have moved...

... to a two bedded room! :)

The nurse came in an hour ago and said "Tan Min Ser, pindah bilik (shift room)". I asked "sekarang (now?)" "ya".

I can't imagine how we managed to collect so much stuff in our one quarter space since yesterday. But we shifted everything. Our food, clothes, bags, folding plastic chair, p1 modem... and the nurses rolled over the bed to the new room.

Aunties and uncles were so cute. They were so curious. "oh, pergi mana? (Where are you going?)". One aunty even came to peek at our new room. "zhe pian hau ar. (This room is nice.)"

It IS nice. More spacious and definitely more quiet.

Second day at Ampang Hospital

There is no private wing here. We are currently warded in a 3rd class 4 bedded ward. No complains, though it would be nice to have a single room once he starts treatment (better rest and a perceived cleaner environment).

But staying in a shared ward is a different experience altogether. The other patients are all elderly and so we are forced to speak mandarin or BM. The uncles are undergoing chemo as well, and the aunties are their faithful wives who never seem to leave their side. They are really friendly.

A Dr Jerome, who reports to Dr Chang, now oversees Min Ser. Treatment for chemo will only begin next week after a PET + CT Scan is done in Putrajaya Hospital (he will get to ride in an ambulance). His blood samples will also be sent to SGH for mutation studies.

Dr Jerome explained that good mutations has a lower chance of relapse and will be easier to undergo a bone marrow transplant (or may even not need a transplant). Bad mutations will definitely require a bone marrow transplant. All in all mutation studies will be useful in the future as it will help to detract any early signs of relapse with even just 0.01% abnormality in the blood stream.

Min Ser is well. Albeit more tired then usual, uncomfortable muscle ache on his left shoulder and back, and slight blurry vision (dot in the middle) in his right eye. He saw an optomologist yesterday, who says it's not connected to leukemia and probably stress induced. He is prescribed eye drops and vision is expected to recover in a few weeks.

First day at Ampang Hospital

We arrived early in the morning. Taking the MEX highway from Putrajaya was a good choice. It was smooth traffic all the way until we reached the Kampung Pandan roundabout.

The hospital looks newer than Selayang Hospital, and not as large an area. Navigating was easy, but crowded as expected. We arrived before 8am. After registration, taking of blood, and waiting for results, we were called in to see Dr Chang at 10+am.

He explained the nature of AML to us, as well as the treatment and side effects. Min Ser will have to do 3-4 cycles of chemo. Each cycle will consist of one week of treatment and 2 weeks in hospital. If all goes well, he will be able to go home for a week. The cycle will then start again. The highest risk of infection is during the 2nd and 3rd week during the first cycle. He will have no immunity left. Even his mucous lining will break down, and that's when mouth and throat ulcers will occur, along with lost of appetite and vomiting.

Moving forward, if he responds well to chemo and is in remission (no more cancer cells). A bone marrow transplant may most likely need to be undertaken. Best case scenario would be a complete sibling match. There is a 25% chance of a complete match and 50% chance of a half match. Min Ser has one younger sister. A chance of a match from an unrelated donor is also an option with registries from Taiwan and China. From these registries, there is a 1 out of 2 chance of finding a match.

Understanding what's involved is important as it helps us make informed decisions. We have heard much about what to expect, but I'm sure nothing will prepare us for the reality of it. That being said, we came in to the hospital today decided on seeking treatment. When Dr Chang asked Min Ser if he wants to be warded today. The answer was yes.

Raffles and SGH

We were in Raffles Hospital's Cancer Research Centre early this morning. We meant just to drop off samples for Monday's appointment. But while we were waiting, we were called in to see Dr Daryl. The latest info from yesterday's blood test clearer shows leukemia, thus there is no reason to do further biopsy on the samples we brought.

Our afternoon appointment with Dr Tien brought about the same remarks.

Today's appointments with Dr Daryl and Prof Tien affirms AML. A blood test done in SGH also shows that blasts in Min Ser's blood stream is now higher. This proves that the cancer is progressing quickly and we are advised to seek treatment ASAP. We asked if there was any new development for this type of leukemia in Singaopore, and apparently there isn't. It's still basic untargated chemo.

We thank God that Min Ser's appointment with Dr Chang at Ampang Hospital has been brought forward to Monday morning. A colleague of a friend is actually Dr Chang's brother, and that helped a lot. Truly we have been experiencing God's favour for things to fall into place so quickly and efficiently.  We'll be flying back tomorrow morning.

A clearer diagnosis

Arrived in Singapore an hour ago. We are staying with friends. We truly appreciate the comfort and convenience of avoiding public transport and crowded places. Not to mention good home cooked food. Thank you Steve and Adelene.

Min Ser's bone marrow results are not yet ready, but this morning we received results of his blood test taken during Monday's procedure. Blast cells, 22% were found in his blood stream which confirms AML.

Looks like we had our clear diagnosis even before take off. If the other 2 doctors concur, then it's pretty clear what next steps need to be taken.

Appointments in Singapore

It's amazing how quickly events are unfolding. We managed to get two appointments with two haematologists in Singapore. One with Dr Daryl Tan at Raffles Hospital, Monday morning (recommended by Dr Haris) and one with Dr Tien in Singapore General Hospital, Friday afternoon. The SGH appointment was arranged through a friend of a friend of a friend, otherwise it would have been difficult to get an appointment with the head haematologist of SGH blood bank at such short notice.

It is also possible to do a fresh biopsy in Raffles Hospital. If we drop samples in for biopsy, fresh results will be out for Monday morning's appointment.

Flying off tomorrow evening. Praying for clarity and a clear diagnosis.

We have an appointment with Dr Chang

Thank God! A relative of Min Ser has a friend who works in Ampang hospital who has helped us arrange the earliest appointment with Dr Chang on 6/3 (Wed). This helps a lot as we are very likely to do treatment in Ampang Hospital if the diagnosis is 100% accurate

Bone marrow sample taken

Procedure went well at SDMC. And relatively quickly too. We arrived before 2pm and were out before 5pm. It's a relatively straightforward procedure, though Min Ser was under general anesthetic. Bone marrow sample was taken from his left hip, and he does not feel any pain. But he was really very drowsy right after.

Our next step is to get an appointment with the very sought after Dr Chang, head haematologist at Ampang Hospital (leading hospital in Malaysia for blood related cases) and also to arrange for second opinion in Singapore. We managed to get the referral letters today itself.

Second biopsy concurs

The second biopsy from duodenum during the spy glass procedure was found to be granulytic sarcoma, which confirms what was found from the first sample. Brushings from the bile duct area was discovered to be inflammation, but it could be a false negative. In any case, as it's looking more and more like an extramedullary tumour we won't be treating the tumour itself, but the cause: ie leukemia.

Next step, bone marrow sample on Monday.

Min Ser has also been discharged from Selayang Hospital. Phew, we weren't sure when it would be and didn't want to delay the next procedure later than needed. He is still doing well, but getting weaker, and he has a bad ache in his left shoulder and back that is keeping him awake.

Enjoying Selayang Hospital

Hmm... never thought I'd use the word enjoy and hospital in the same sentence. But Selayang Hospital has a beautiful private ward (bayaran penuh). It's almost like a hotel. The single room is huge, and there is a complimentary guest bed for sleepover (which is comfy!). More than double the size of SDMC and almost half the price! Malaysia boleh.

We are just taking this time to rest, and taking a break from all the nonsense (yes, it still doesn't make sense why this is happening). Min Ser is still being held for observation as he has fever fluctuating from 37.2 - 38.9 celcius. Nothing alarming, just precautionary measures.

It helps that Min Ser's aunt stays just a stone's throw away, and she has been kindly cooking most of our meals (sadly, the hospital food in selayang is not very good). Again, we are so thankful for our parents and relatives. And the constant smses from friends. It is so encouraging to know we are remembered and that many ones are praying for us.

Spy glass

Selayang Hospital and SDMC is really different. Finding a parking in Selayang Hospital is difficult, the wait is long and the professionalism is lacking. Yet, the experience is balanced off by the slight 'entertainment' provided by the people in the waiting room and nurses. Haha, maybe I'll post more details on the comical side of things, on a later date.

We left home at 6.30am and arrived Selayang Hospital slightly before 8am. Min Ser entered the preparation area at 10am and procedure started at 11.30am. By 1pm the procedure was done, and by 4.30pm he was wheeled to his ward. All in all, a smooth procedure.

Both Dr Sharmila and Dr Krishnan concur that the lesion in the bile duct area and the duodenum look similar through the spy glass. Brushings of the bile duct and a 2nd sample of the duodenum ulcer was taken. Our appointment for haemotologist Dr Haris was set for Sat morning. If we were to rush the samples to pathology in SDMC in person, we will be able to get the results out by Friday. We realised what takes 2 days for results in SDMC will take 2-3 weeks in Selayang Hospital. Though the procedure which cost us 8k+ in SDMC, costs us RM300 in Selayang (and this is with the spy glass procedure included). If we had a government clinic referral, it would have cost us RM30. The disparity is alarming, it seems that every citizen in Malaysia will be able to receive adequate health care, if they have the luxury of time.

Leukemia?

We arrived early in SDMC. Spoke to Dr Sharmila for a brief moment. She pretty explained what she spoke through the phone yesterday, but she felt sorry that he "Had to be so rare, and that as doctors they are still constantly learning".

We were then referred to a Dr Haris, consultant haematologist. He kindly but clearly explained that the tumour found in Min Ser's duodenum was granulytic sarcoma (chloroma) which points to the cause being a form of leukemia (AML to be exact) and not lymphoma. The rare part is for a tumour to form outside the blood before showing signs in the blood. As of today, Min Ser's blood counts are still normal, save slight anemia. Even rarer for it to appear in the gastrointestinal tract. Usually it's found in the skin or other major organs.

He suggested that as there is still some time (it has yet to manifest in the blood) we might like to have 2nd or 3rd opinions, and even fresh biopsies of the sample. Dr Haris does not recommend any treatment until we are 100% sure of the diagnosis. For the very reason that there is no localised trestment for leukemia. The treatment itself carries risk of mortality caused by infection. This is because the treatment is crude and untargeted. Killing the cancer cells involves killing the healthy cells completely. Leaving him with no immunity. But his advantage is that he is young, and likely to have less complications.

In the meantime we will still proceed with the spyglass procedure tomorrow, and a bone marrow sample will be taken the next Monday for a clearer picture.

We walked out feeling numb, yet calm. The diagnosis just kept getting worse and worses, but I felt that God has already told me in my heart that the diagnosis wouldn't be something simple. Yet hoping for the best and not wanting to be negligent, we will proceed to arrange for more opinions.

Lymphoma?

Dr Sharmila called. Biopsy results are out and the ulcer in Min Ser's duodenum turns out to be a tumour that could point to a form of lymphoma. We need to see Dr Sharmila and a haemotologist will better explain the situation tomorrow.

Home on V day

Happy V-day! Min Ser is finally discharged from SDMC. Still slightly weak, but his digestive system has recovered tremendously and he can eat more solids. Though nothing oily, spicy...

Jo is back home too! Happy to have some normalcy back.

Spy glass procedure is scheduled for 20/2 (wed). But biopsy of his duodenum is still pending.

3rd day in SDMC

He can eat semi solids now. His liver functions are slowly recovering, but there are times of extreme pain (abdomen area) and he needs the painkillers. A couple of high fever incidents as well, but controlled with paracetamol.

It's a good thing we got the single room. It's quiet, and I get to sleep over at night. Though it does get tiring after a while... SDMC only provides the plastic chairs that can be pulled out to sleep on. Though I'm not keen to leave Min Ser, I'm happy to be able to sleep on a proper bed tonight. Thanks Sue Min!

CT scan and prognosis

11am
He's been on slight water and drips since yesterday afternoon. He now has to drink 3 cups of water to undergo CT scan. Must be so uncomfortable. Poor dear felt so bloated after the procedure. It's like the MRI machine you see in the movies. His only complaint (besides the bloatedness) was that the hospital was using a competitors product. "GE one better". Ok, if you say so dear.

2pm
Based on CT scan results. There is no obvious blockage (tumour or stone) in the bile duct. Nothing in the gallbladder, nor is there any mass pressing in from the outside. The only cause could be something IN the bile duct. We were presented with 3 possibilities:-

1. Tumour
2. Tibi in the bile duct
3. Autoimmune pancreatitis

A Dr Krishnan, Liver Hepatic Biliary specialist from Selayang hospital (apparently it's the leading hospital in Malaysia for liver ailments) will be consulted on his thoughts.

4.30pm
We were visited by Dr Krishnan, and he ruled out option no 3 (the stricture was a bit too high in the bile duct). No 2 was very very rare, but a possibility. No 1 is most likely (if Min Ser was 60 years old, he will say it was without a doubt, and would suggest surgery.)

But because of the situation (Min Ser being 30 years old), we were presented an option of a relatively new procedure using a spyglass. A scope within a scope (ERCP), a tiny camera which would help give better on light on the lesion. There are only 2 hospitals in Malaysia which has this equipment, and Selayang is one of them.

We agreed without a doubt. We were hoping for a diagnosis that would prevent surgery.

Feeling the love

All the drama has only started this past 2 days, but we already feel all the love and prayer support from friends and family. We only told a close few, but yeah, word gets around.

We always knew that we were loved, but it's in times like this, we know just how much. God has been good to us, we are constantly reminded of his character and that he loves us. But it is really through people that his love is manifested.

There's still a lot of uncertainty. We hope for the best, but also preparing for... not the best.

As of now, Min Ser prefers to rest and not to have visitors. He's still reliant on drips and painkillers for relief. He can now drink more substantial liquids like Milo and soup. Praying he recovers quickly. He needs to recover before he can undergo another procedure like the spy glass. Meanwhile biopsy results of his duodenum is still outstanding. It may only be out next week as it's still the long holidays. Sigh...

First day in hospital

6.00am
We were on our way to Kedah. We somehow managed to leave the house as planned, 5.30am. It was a restless night before, as Min Ser was constantly uncomfortable, tossing and turning, walking around, he said it was his gastric, and it was uncomfortable to lie down.

We were seriously considering canceling our trip and checking him into hospital. Once we saw the traffic on the NKVE we thought no way he can survive the traffic or the trip. We entered into Kota Damansara and headed to Sime Darby Medical Centre.

Upon arrival, we headed straight to the ER. Doc's conclusion after all our explanation and looking at his symptoms was... jaundice. Now we just have to discover the cause.

9.30am
He was on a wheelchair and wheeled for ultrasound and X-ray. The gastroenterologist we were referred to was Dr Sharmila. She presented the most likely cause to be gallstones obstructing the bile duct. To know for sure an ERCP needs to be done. Without further delay, has was prepared for the procedure.

11am
His hepatic ducts were very dilated due to the obstruction and high bilirubin levels. There was no obvious stone discovered, but his bile duct was very tight, it was difficult, but they managed to place a plastic stent inside his bile duct. With stent in place his liver functions should return to normal over the next couple of weeks.

An ulcer was also found in his duodenum. The suspicious part is that it isn't a clean ulcer. There are lumpy parts on the outer parts of the circumference, a sample of the area was taken for biopsy. Nothing more can be done, and a CT scan is scheduled for tomorrow.

12.30pm
Min Ser was placed in the ward for recovery, but he experienced extreme pain in his abdomen (pain level 8). He was given a dose of pethidine to relief the pain.

The beginning

Min Ser came home unwell. He's been having brownish urine for more than a week and pale coloured stools. It's then I noticed his eye whites were yellow. Definitely not normal... googled the symptoms, and we were presented with possible jaundice. Yikes! The list of causes were from liver inflammation to liver cancer. Hep A, Hep B, hep C?

He has been having ongoing gastric for the past 2 months. Some days worse than others. This seem like one of those days.

Tomorrow is the eve to Chinese New Year! We're to travel to Kedah tomorrow. Our baby Jo is not with us either... we miss her. His situation settled after some rest, so we thought, hey... let's see what happens tomorrow.